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TBI In The New Millennium

TBI 2000 From Survival to Discovery:

Living with Brain Injury in the Community
 

Constance Miller, MA
Brain Injury Resource
Seattle, Washington

206-621-8558

http://www.headinjury.com
brain@headinjury.com
 

December 3, 1999
 

A Presentation made to the
1999 National Interagency TBI Conference
TBI in the 21st Century: 
Learning From Models of Research and Service Delivery
National Institutes of Health
Bethesda, MD


 

TBI 2000 From Survival to Discovery
 
 

We were asked to address three questions in our remarks today, and I will address each in turn.

        1. ... What ONE thing would you want others to know about your experience with rehabilitation/service delivery?

          The most important lesson that I learned about Traumatic Brain Injury, TBI rehabilitation is that the well-informed patient is the best served patient. Additionally, I learned that informed, proactive patients make the best recovery. A third essential lesson I learned is the need for the creation, and maintenance of collaborative relationships between the survivor, the family and the professionals who serve them.

          Unfortunately, most TBI patients do not have the luxury of such options because outdated medical notions and practices prevent it. First of all, meaningful information concerning the long-term consequences of Post Concussion Syndrome, PCS, is in short supply. Secondly, TBI patients are routinely told that their neuropsychological impairments are not related to their head injuries. Third, and incredibly so, many doctors chastise their patients who dare to try to initiate a collaborative approach to TBI management.

          Instead of meaningful, information TBI patients are given vague reassurances, and told to expect to make a full recovery. Unfulfilled expectations concerning TBI recovery is a consistent theme among families and survivors alike. It motivated my interest in TBI following my own TBI in a 1982 car accident. Prior to that life-changing event, I enjoyed a full, rich lifestyle that included womenís rights and health care advocacy as well as a brief career as a university professor.

          On that fateful day in 1982, I bumped my head in a car crash and my world turned upside down. When I came to, I felt as though I had been disembodied, disconnected from my past and myself. The sensation was that of being outside of my body; viewing myself from afar. It was as though my head was in the clouds and my feet were planted in some strange yet familiar place.

          There were blank spots in my memory and gaps in my consciousness. Words eluded me and my thoughts were frequently out of control. Sounds were muffled and sometimes irritating, and worst of all, nothing made sense. I thought to myself, this is spooky, suddenly for some unknown reason the world had become a strange and scary place.

         Instinctually, I felt that something was very wrong although I was hard pressed to get others to confirm my impressions. I desperately needed answers, and much to my horror, the answers that were given were the wrong answers. It did not take long for me to realize that my very life was at stake. In the blink of an eye, I had been transformed from a vital, mid-career professional to one of the undead. 

          Essentially, life as I had known it no longer existed for me. I had become a mere shadow of my former self. Yet, something in myself propelled me onward as I launched into the task of creating a new self and a new identity out of the wreckage of my life. Fortunately, my pre-injury accomplishments enabled me to unlock the mystery of MTBI, and create a new life for myself. 
 

- 2- 
 
 
TBI 2000:  From Survival to Discovery 
by Constance Miller
P. 3 
 

I was relieved to find that the answers to the mysteries of TBI were well-known to medical science. Unfortunately, statements that accused patients of manufacturing or overstating their impairments frequently accompanied such answers. The most troublesome aspect of those findings was my realization that such conclusions were not supported by scientific methodology. 

I applied what I learned to restoring myself and to selecting and educating my doctors and lawyers. Then, I put everything into a self-help guide called From The Ashes. Then I founded the Brain Injury Resource Center to advise people on the syndrome, and on social and career services available to them. 

Unfortunately, 18 years later TBI awareness has not changed very much. A recent email to Head Injury Hotline provides a poignant case in point. Itís from the sister of a 20 year-old young man who sustained a TBI in a 1998 motorcycle accident. Her comments are appended below:

Scotty was in coma for 2½ weeks and was sent home about a month later. Initially, we were thrilled to have him back home with us. However, before long it became clear that somehow Scotty had changed, and we sensed that it was going to be a long time before he truly come home to us.

We werenít given any information on his injury, nor did we know what to expect. They simply said, give it time. Well, before long Scotty became angry and extremely hostile. The doctors told us there was nothing to do and he was fine it was just the healing process. Pretty soon, things escalated, to the point where it became impossible for him to live with my mom any more. 

Around that time our father was diagnosed with cancer and died a month and a half later. My brother was unable to understand his death and our grief, and was very angry with everyone. Thatís when he began to get in trouble with the law.

Scotty was no longer the same he had changed in some very deep, and basic ways. He was unable to read, nor comprehend anything. He could barely get dressed, and he refused help. Again, we asked for help from the doctors and the state but everyone said that he was okay and this was just the healing process.

His behavior became so unbearable that we had to get him a place of his own. It was then that he began to harass women. But, he didn't think of it as "harassment" and he was very sexually confused. Again, we went to the doctors and asked them what could be done Again, they said he knew what he was doing and he was just faking it?

- 3 -

 
TBI 2000:  From Survival to Discovery 
by Constance Miller
P. 4 
 

Because he was of age the family had no rights to his medical information. Throughout it all, he remained hostile and belligerent. A few weeks later he was arrested for indecent liberties with a minor and a few other charges. He was convicted and sentenced to 2½ months in county jail following which he was committed to the state mental hospital. 

Currently, He has been there 3 weeks and I'm very scared for him. He is sedated to the point of memory loss, drooling and distance. We don't know what the medication is but I don't think they plan on taking him off anytime soon. 

I feel that they don't really care about Scottie, and just want to keep him sedated all the time. I really don't know what to expect back from this email but I would just like a little direction I'm worried and at a loss. 

I love my brother very much and we were very close he was nothing at all like this before the accident and I feel that me and my mom have been ignored and laughed at. If you could please send me back some direction on what I can do or even what I can't, who I can talk to anything."

Change the pertinent details, and tone down the outbursts you have a recreation of the early days of my TBI recovery. I like to think that my maturity and other powerful motivators saved me from a similar fate. However there were times when I ventured really close to the edge, and it took all the will that I could muster to keep me safe.

2. What helped create your success...? 

Clearly, my own tenacity and resourcefulness created my success. However, I owe a debt of gratitude to the invaluable help, and enduring assistance of my family friends and personal support network.

3. What advice would give to people working in the field of TBI?

I would urge them to approach this work with an open heart and an open mind. Remember that you have chosen to work with a patient/client population that is very needy and sometimes, not very likable. However, like yourselves, most of them are good people, they deserve your compassion and respect. They, after all, are the true TBI experts; they simply need your guidance and support. If you really want to help, rather than simply perpetuate the status quo, I would urge you to listen to your clients with an open heart and a open mind. Understand that your clients are hurting, and in desperate need of meaningful information and resources. Make yourselves knowledgeable concerning resources and services, and then make your self-available to your clients.

_____

Beers Mark H., MD and Berkow, Robert, MD, (eds) The Merck Manual of Diagnosis and Therapy, 17th edition, Rahway, NJ: 1999

National Institutes of Health. Traumatic Brain Injury Rehabilitation Consensus Conference Statement, Bethesda, MD: October 1998 

Rappaport M, Herrero-Backe C, Rappaport ML, Winterfield KM. Head Injury outcome up to ten years later. Arch Phys Med Rehabil 1989;70(13):885-92
 


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